The COVID-19 pandemic has made life challenging for persons with disabilities, who typically have more healthcare demands than others. Contradictorily, despite their unique and often steep health-care demands as compared to their abled-bodied counterparts, persons with disabilities and their needs are often missed or unaccounted. This emerges out of poor access to information, communication and technology (ICT). Such inaccessibility can also be observed in health care services, WASH facilities, and food delivery. The resultant effect of such marginalisation often leads to loss of livelihood opportunities, poor quality of life and detrimental effect on the mental and physical health of persons with disabilities. Hence, an efficient service delivery system that is attuned to the needs of the marginalised communities, especially persons with disabilities is critical. For these reasons, there is a need for collecting citizen- centric data, which is both disaggregated and reflective of the needs and aspirations of persons with disabilities.

According to UNICEF "Inclusive data are key to eliminating discrimination based on disability and accelerating global efforts towards inclusive programming. This will help ensure that their experiences and needs are adequately reflected in the evidence being generated". Articles 4 and 31 of UNCRPD, also emphasizes states to collect data and disaggregate data on persons with disabilities to implement and measure the Sustainable Development Goals. For instance, it was recommended by UNCRPD in Kenya to collect data on women with disabilities to prevent gender discrimination and promote programmes that upholds gender equality and the rights of women and girls. Similarly, it was recommended that the Australian criminal justice system, to collect disaggregated data on inmates with disability that is broken down by disability, age, gender, location, and ethnicity, at all stages of the criminal justice system to understand the population held in custody.

This demonstrates the importance of data in evidence-based policy reforms, plug policy gaps, and ensure effective policy-making to promote equity in society so that people with disabilities can actively participate in society and contribute to the economy. Investigating the flipside, data gaps can also lead to major barriers in designing programmes and policies that are inclusive of people with disabilities. It can also perpetuate marginalisation of vulnerable sections in the society. WHO/ESCAP states that “A number of countries in the Asia Pacific Region have conducted disability surveys or included disability questions in their censuses, but users were not satisfied with the results. The most common complaint was that the statistics were based on a handful of severe impairments and did not capture broader measures of disability”. This is an illustration of how data collection processes have not been able to capture the full requirements of those who could potentially benefit from such data collecting exercise.

“Gathering qualitative data and engaging in participatory research with persons with disabilities and their representative organizations are incredibly important and can complement existing quantitative data sources” (Persons With Disabilities and Data Inclusion – the International Civil Society Center, 2021). From the above, it may also be inferred that including persons with disabilities or organisations with persons with disabilities (OPD) should be a part of the entire data value chain. Without the participation of the beneficiary community, how can an inclusive policy be formed? In this regard, community-driven and citizen-centric data collection can help narrow such gaps where persons with disabilities and their organisations are closely consulted at all stages of the data collection/aggregation/analysis/and eventual use. Such data should represent qualitative aspects of disability and quantitative data that encapsulates their unique needs and aspirations. Collecting quantitative data via participatory methods with the support of qualitative data can have beneficial outcomes for cities, states, and countries.

Further, in order to effectively reach out to important stakeholders and encourage the use of evidence, dissemination and advocacy methods must be specific and direct. The toolkit developed by the Stakeholder Group of Persons with Disabilities, the International Disability Alliance, Disabled Peoples' International, and CBM Global Disability Inclusion is a model from which we can all learn. This toolkit advocates and places a strong emphasis on the necessity for organizations of people with disabilities (OPDs) to participate in data collection, analysis, and usage for evidence-based advocacy to influence policy and decision-makers. The Washington Group's (WG) brief set of questions that were used in the August 2019 Kenya Population and Housing Census is another example of organizations of persons with disabilities (OPDs) led advocacy. The stakeholders particularly pushed for the inclusion of the WG-set question in the census in the hopes that it would guarantee the availability of high-quality data that can guide interventions.

As mentioned above, there are a few established mechanisms for how disability data is collected around the world. However, there is a necessity to localise the methodology specific to the spatial differences and diversity within the vulnerabilities. In the next blog, we'll focus on case studies data created by organizations for people with disabilities (OPDs) and Citizen Generated Data (CDG), and how both tools can be used for filling gaps in government policies and addressing community-specific issues on disability.

References-

1. Disability Data Advocacy Toolkit. (n.d.). the Stakeholder Group of Persons with Disabilities, the International Disability Alliance, Disabled Peoples’ International, and CBM Global Disability Inclusion. Retrieved November 7, 2022, from http://cbm-global.org/wp-content/uploads/2020/11/DisabilityData_advocacytoolkit_accessible.pdf

2. Disability Statistics: Why Are They Important and What Does the ICF Add? (n.d.). Retrieved November 9, 2022, from https://www.unescap.org/sites/default/files/Chapter1-Disability-Statistics-E.pdf

3. Shakespeare, T. (2021, April 10). Triple jeopardy: disabled people and the COVID-19 pandemic. The Lancet. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00625-5/fulltext

4. UNICEF (2020). Producing disability-inclusive data: Why it matters and what it takes. Retrieved November 29, 2022, from https://data.unicef.org/resources/producing-disability-inclusive-data-why-it-matters-and-what-it-takes/

5. WHO/ESCAP (2008). (rep.). Training Manual on Disability Statistics. Retrieved November 29, 2022, from https://www.unescap.org/resources/training-manual-disability-statistics.

About the Authors

Neha Sangma, Professional Intern, NIUA

Veronica Q. Wijunamai, Learnings and Communication Associate, NIUA